What do we tetraplegics dream of in our sleep? Do we walk in our dreams? Do we dream in colours? If dreams are the true reflections of our innermost sentiments, then my world is a monochromatic drama of fear, helplessness and insecurity. I used to have this vivid and recurring nightmare of suddenly plunging from a great height. Amidst the nerve-racking sensation of weightlessness and free falling, my hands would desperately flail on reflex to break the fall. Consequently I would be jolted awake, hyperventilating, heart beating rapidly and badly shaken from the ordeal.

I dream often. I know I do. The distressing part is that the moment my eyes caught light, the images that had been acting out in my mind would begin to melt into obscurity. As hard as I tried, I seldom could fully recollect those nocturnal theatrics except for fragments that made no sense when pieced together. For a while after that, it would feel like some parts of my life were missing, irretrievably lost in the muddle of my erratic psyche.

One time, I found myself swimming for my life in a swollen river that had threatened to swallow me up. I paddled and kicked with all my might but to no avail. The raging currents carried me further and further away from the muddied banks. Another time, overwhelming fear so totally paralysed me that I could hardly move. I opened my mouth to scream but no words came out. That feeling of impotence would affect me for hours later, sometimes days.

The most significant dreams I had were of Mum. I dreamt of her three months after she passed away. We were in an old fortification overlooking the sea. It was dusky. She looked dispassionate and spoke nary a word. We stood there looking at each other for a long time. Then she beckoned me to follow her. As I was deciding whether to follow her or not, I woke up. One early morning several weeks later, in the absolute darkness, I heard her voice saying, “If you do not take care of yourself, you will not live beyond two years.”

That prompted me to get my blood screened. Indeed, the results revealed that all was not well. My serum creatinine had shot up significantly, I was anaemic, my lipoprotein ratio was hovering on the borderline and those uric acid figures did not look good. That was the period which I had lapsed in looking after my health. I had refused to take the medicine that was prescribed because of the extreme side effects that I was experiencing. My intermittent catheterisation programme went to the dogs. I performed it only when I remembered instead of every four hourly. Beyond doubt, my kidneys were in a bad shape. Nevertheless the question is: Did I really hear Mum�s voice or was that just a dream? I cannot be sure but that probably had saved my kidneys from further damage.

Regardless of the nightmares that have been plaguing me every now and then, I am thankful that one thing has not changed. Do tetraplegics walk in their dreams? I know I do, all the time, every time. In the two decades that I have been paralysed, I have never ever dreamt of being in a wheelchair. I was walking, I was running, I was swimming, but never forlornly sitting on a wheelchair. For those brief moments that my mind was allowed unrepressed creative liberty, I was free again, unshackled from the body that no longer heeded my commands. The one thing that has changed is that I have not dreamt of falling uncontrollably again after I broke my neck. That is one nightmare less to worry about.

X-ray of my spine before and after surgery.
Image courtesy of Mr. Kazem Djavadkhani, Neurosurgeon.
There is no weather-beaten host to egg participants on. There are no scripts to follow. Life is played out as it is. The tears are real, the pain and suffering are too. Losers do not get booted out. They just do not make it out alive. Those that are left behind are left to savour their victory for a while longer. Welcome to Survivor SCI – More Than A Reality TV Show. It is here, it is real and I live it everyday.

The rules are simple. All that is needed to participate is to break a vertebra or two, or suffer from spinal stenosis. I qualified by virtue of fracturing my fifth (C5) and sixth (C6) cervical vertebra. The game begins the moment paralysis sets in. After that, the only objective is to last as long as possible. There is nobody to outplay except oneself, and no one to outwit except one’s own fickle mind. There will be no clear winner and no US$1,000,000 waiting to be taken home. Like everybody else, all participants will eventually succumb in the end anyway.

The odds have already been mapped out. The higher the level of damage to the spinal cord, the higher the probability of having to retire earlier. In the USA, the life expectancy is 42 years post injury for a person suffering damage at the fifth and sixth cervical vertebra at age 20. Malaysia’s life expectancy at birth is 71 years for the male population. My odds do not look that good as compared to the average Malaysian male lifespan.

After becoming an unwitting inductee into this game, I associated my odds with that of the first tetraplegic I met in the hospital. He survived only twelve years, just a couple of years after we got acquainted. Twelve years seemed like it was very far away then. I did not give it much thought because my condition was still uncertain. I thought I would be walking again soon.

Even before I hit the first decade, I was beginning to suffer a reflux of urine back to the kidneys, causing them to be swollen. That led me to consult Mr. Liong, the urologist at the Lam Wah Ee Hospital, in the early nineties. I have been performing the unpleasant task of catheterising myself since.

Dad passed away exactly one month after my first decade as a tetraplegic. Death was no longer something new to me by then. It had clung on to me like a wet shirt since I was determined that my expiration would soon follow. Still, the thought of leaving Mum to fend for herself alone was something I could not allow myself to do. I was all she had and the thought of her grieving for me was unimaginable, seeing how she grief-stricken she was at Dad’s funeral.

Nevertheless, as the twelve-year mark drew nearer, I wondered how I was going to die. I was not at the brink of death when that ominous day arrived. With that portentous barrier shattered, a sense of great relief settled upon me. Still feeling very much alive, I celebrated that milestone in silent reflection. I looked back at what I had accomplished the past twelve years and thought I had done well considering my disabilities.

From being totally paralysed and totally helpless to running a small photocopying business and earning my own keep was something I had never thought I could pull off. There were obstacles but Mum supported me all the way. She was unequivocally the motivating force behind that unlikely feat. She helped in every way she could. Even if she did not know how, she would devise a way. Such was the love of a mother.

After leaping over that twelve-year point with ease, I set my sights on the next target – the big two zero. I have not foreseen surviving this long but, yes, I have survived twenty years today. This achievement came with a price. I lost Mum and I lost almost half the function of my kidneys. Even with intermittent catheterisation, my kidneys’ condition has continued to deteriorate, albeit rather slowly. I am now down to 60% renal function only.

There were some great moments too along this twenty-year journey. I found the woman that I want to spend the rest of my life with and I discovered the love of Jesus Christ, in that chronological order. These are the two unfolding events that have made my life more fulfilling than it would have been. These are rewards more valuable than winning immunity challenges. They are so priceless that it is virtually impossible to describe the amount of contentment that they have given me.

These twenty years, I have gone through the extremes of human sufferings and joys. It has been a breathless roller coaster ride of ups and downs. From the deepest of depressions to the highest of exhilarations, I have gone through them. I have lived a life many would have to go through many lifetimes to experience. Sometimes, I outwit myself and sometimes I get outwitted by the ostensibly hopelessness of the situations. At times, I felt like giving it all up while other times I just wanted more of the good things that were coming my way.

“The statistics say that I have another twenty two years,” I told Wuan a few days ago.

“So little only?” she half asked, half sounded disappointed.

“We have used up five years. Let us make the best out of the remaining twenty two. Twenty two years is a long time if we count it by the day.”

In truth, those are just figures of the average. I may survive that long, even longer or much less. It all boils down to the state of my kidneys and how much longer God wants me to be around. I am grateful for these twenty years, for still being alive. I have learnt many valuable lessons. I have learnt that a mother’s love knows no bounds. I have made many genuine friends. I have seen the evil in men. I have seen the kindness that came sincerely from the heart.

Look Mum, I have made twenty years! Thank you for giving me hope when there was none left to cling on to. Thank you for giving me life twice, first when you brought me into this world and again when I thought the battle was all lost. You stood by me no matter what. My surviving twenty years is testimony of your undying love, gentle care and the immense sacrifices that you have to make to put me where I am today. Thank you Mum. Another twenty years? Only time will tell. But why not? I can see her smiling now. What she did for me was not in vain after all. Although the odds of staying on is getting thinner by the day, I am still in the running in Survivor SCI. That is what matters most.

* Letters from friends when I was in the hospital have been added to the Gallery.

Christopher Reeve, the symbol of spinal cord injury research activism, has died at age 52. News report has it that he went into a coma after a cardiac arrest on Saturday and died on Sunday. It was also stated that he was being treated for a pressure sore, a common complication for those living with paralysis. Pressure sores develop when the skin and tissues surrounding bony protuberances in the body dies after the blood supply to the skin is cut off due to an extended period of inactivity such as sitting or lying down for too long in the same position.

The actor, famous for his role in four Superman movies, broke his neck when he was thrown from his horse on May 27, 1995. The fall crushed his first and second cervical vertebras and severely damaged his spinal cord. With damage this high on the spinal cord, Reeve lost the ability to breathe and also lost sensory and motor functions below the level of injury. In short, he was totally paralysed and would die without the aid of a ventilator to help him breathe.

Reeve had been vocal in his push for stem cell research, considered a critical component in the cure for spinal cord injury. President Bush had opposed stem cell research and funding for such studies have been severely cut by the US government. The research involves stem cells derived from human embryos and is opposed by many because of its ethical, moral, legal and religious ramifications. Despite this setback, Christopher Reeve had been the flag bearer of hope for those afflicted with spinal cord injury.

May his soul rest in peace.

In the hubbub of everyday living, I tend to forget who I am. There are bills to pay, things to get done, meals to cook, groceries to buy and a thousand other things that run through my mind from the moment I awake in the morning until the second I fall asleep at night. Caught in this mad rush to go through each day, I also lost sight of who I want to be. A mechanical being is what I have become, doing things in set ways day in day out every day of the week. The humanness in me was slowly being chipped away by these daily drudgeries.

There were also times when I got arrogant. I wittingly let little accomplishments get to my head believing that I alone can achieve those feats without needing help. I allowed myself to grow into a self-centred and vain person. Those are not good traits that I want to possess. The times that I realised my follies, I felt ashamed of it but they were soon forgotten and repeated. Old habits die hard.

My ego needed to be pricked constantly to bring me back down to earth. The innocence that I used to possess had to be rejuvenated and the perfunctory temporarily discarded. These I must do to bring the simplicity back into my life again. I discovered no better way than following one simple rule of abstinence. I have been observing Meatless Fridays for the past three weeks. Meatless Friday is an age-old Roman Catholic tradition that is not strictly adhered to anymore now. For me, there is more to it than its religious significance.

It takes a conscious effort to become a vegetarian once a week. This deliberate self-denial brings realisation to the question mark of whom I am and who I want to be. As I tuck the vegetables into my mouth, I am reminded of the purpose I am eating this meal. I am constantly prompted to thank God for the little blessings that come my way every so often, to practice humility in my dealings with everyone and to recognise my limitations. Vegetarianism teaches me patience and self discipline, two virtues which I yearn for in myself.

Forgoing meat brings back the essence of humanness into my life. I am reminded that every life is sacred and should be treated with respect irrespective of species and whatever their purpose to us the Divine had intended. It is also an opportunity to give my body a rest from the other unhealthy meals that I have been having for the rest of the week. For a moment the chores that had been depressing my days to no end seemed to melt away. For one day in the week, I can feel alive again. Worries are furthest away from my mind. Life has become simple once more. If I can, I will be skipping like a little child come every Friday.

Sheila and LS

Peter is not working today. I got him to fetch me to town to get some things done right after an early lunch. It looked like it was going to rain but when we reached Little India, the sun was shinning brightly. After settling my affairs there, we went to meet LS at the City Bayview Hotel. LS, a Malaysian currently residing in England, is back here for a holiday. He has been a quadriplegic for twenty two years. Sheila, his caregiver for seventeen years now, accompanied him on his trip here.

We shared about our lives and our disabilities. LS was very vocal about the lack of basic facilities catering to the needs of the disabled community here. Transport, access and public awareness are foremost in his mind. It was an eye opener talking to him and Sheila especially when they talked about the rights accorded to the disabled in the United Kingdom be it from the government or the NGOs.

Forward - Published by the Spinal Injuries Association

LS had problems moving around here as there is no specially adapted van with lifts that can accommodate him in his wheelchair. Pavements were without ramps and were not built to give access to wheelchairs. Those that had oftentimes were obstructed by haphazardly parked motorcycles, carts, lampposts and fire hydrants. Sheila had to push him on the road most of the times. Wuan and I have experienced that when we went exploring the Inner City a few months back. It was a harrowing experience with traffic speeding by just a couple of inches from us.

We agreed that a lot can be done to improve the plight of the disabled here. I have seen the gradual improvement in the basic amenities for the disabled in public areas and buildings. However, the provision of such facilities is not at par with the speed of our nation’s progress. No wonder most of the disabled are left behind in our race to be a first world country by the year 2020. Apart from having limited job opportunities, we have problems with infrastructures that were built without giving much consideration to the needs of the disabled.

Before parting, LS presented me with the June edition of a magazine called Forward and a CDROM titled Moving Forward 3: A Guide to Living with Spinal Cord Injury that were both published by the Spinal Injuries Association. I left the meeting inspired by his doggedness in promoting the rights of the disabled in the United Kingdom and his determination in providing the impetus for the disabled community here to recognise our rights and to press the case with the powers that be. He may be less physically-able than me but he certainly made that up with his tenacity and fortitude in advocating for the rights of his peers which in all honesty put me to shame.

Sinfully yours - Chee Cheong Fun

On our way back, hunger pangs struck since I had an early lunch. Peter and I stopped at Genting Coffee Shop in Island Glades to get something to eat. We both had wanton noodles which was unexceptional. He then ordered popiah which was even more insipid. In a moment of rashness, I ordered a plate of chee cheong fun. This is one dish I had tried to avoid because of the copious amount of shrimp paste and fried chilly paste. The stream of people ordering it was enough to make me throw caution to the wind. This is one of the better tasting chee cheong fun although I have eaten much better ones. Wuan is going to nag me for this. I am sure of it. Ah well, the price to pay for my indulgence.